This past weekend I had the pleasure of attending the 200 years after Parkinson’s symposium hosted by HAPS. the staff did a superb job with nearly 400 attendants and a line of extraordinary speakers.
Over the next few blogs i will discuss some of the salient points that were brought up at this meeting. one of the most interesting of topics was the question of what, how, and when does technology help in the daily care and treatment of PD patients?
I know this was a big topic at the world Parkinson’s congress in Portland this past year and continues to plague the minds of both patients and clinicians as well as scientists- how can we best use this technology already available to help us live better lives?
Although, we live in a rapidly growing technological world – not all people are technologically savvy or able to have access to these wearable devices and other technology. Secondly, even though this type of acquisition of data can lead to more robust numbers, we are not entirely sure how to use it. Moreover, the legal aspects have not been defined. Who owns the data? the doctor? the patient? the creator of the apps or technology? not so simple. But, there is a whole new field that could potentially emerge relating to this.
In my case, the legality is still a big hurtle to over come never mind how to store data so that is secure and get reimbursed for your time. Here in Texas, telemedicine was finally approved for use in various fields which opens up opportunities for people like me who have disabilities but are still cognitively able to be of service to society but navigating the pitfalls and uncertainties of how to provide care from home to a patient also at home is still not clearly defined by the laws. So I wait patiently for my time to be useful once more as a MDS. especially since it is speculated that > 40% of those PD patients who have medicare DO NOT receive care from a neurologist. Thus increasing the morbidity, mortality and decreasing quality of life and independence.
In the meantime, we must find ways to make use of the technology available to fill in the gaps that currently exist in diagnosing and treating PD patients. We all know that although MDS can have a very high rate of accuracy in diagnosis is not 100 % proof. We do make mistakes and most usually come about from experience and knowledge base of individual making diagnosis. further, we all know that for what ever reason, happens to me all the time, mostly because of stress and anxiety which revs up the dopamine production; we tend to look much better at doctor’s office than at home. Thus, giving sometimes an erroneous picture of our illness. we may supplement our current tools through the use of TOMS- technology based objective measures.
There are 2 forms of TOMS:- (e.g. sleep studies, cardiac monitoring)
1.clinical tests conducted by physicians in standardized environments to objectively measure specific behaviors/ symptoms
2. Self- administered tests- using devices to detect and monitor specific functions or over all abilities in daily life.
We all have smartphones, watches, apps, table based tasks, other body sensors which can be used to acquire data.
However, it was discovered that 32% of users stop wearing wearable devices after 6 months and 50% after a year. Novelty wears off.
26% of apps are used only once, 74% ARE NOT USED MORE than 10 times.
plus, most of the devices only measure motor symptoms- leaving still a huge problem in dealing with non- motor issues – which in my experience are the ones that cause the greatest interference in quality of life and lead to unfavorable life style changes.
Some on going initiatives to evaluate some of these toms are…
- At Baylor college of medicine under Dr. Jankovic direction, there is an ongoing study using a wrist wearable device (Parkinson’s kinetigraph (PKG)– to monitor medication response- you wear for 7 days and you are required to click a button when you take medication. this will generate a relevant report upon which actions can be made by doctor.
- Another one is the EU project CUPID- closed loop system for personalized at home rehabilitation for PD patients. their objective is to develop clinical guidelines for developing individual customized rehabilitation programs using technology
- Parkinson’s voice initiative for diagnosing PD – many of you probably have heard or participated in this already- where you simply call in and speak over the phone and make certain vocal sound weather you have pd or not… the crux is to enter enough data from all ages, pd and non pd, both men and women to develop an algorithm that would help detect the difference between a healthy person and one with pd.
- Also have the mPower smartphone App for PD ( introduced in 2015 by Apple) – ongoing looking at tasks like motor initiation, balance and gait, hypohonia and memory. some data like tapping two fingers before and after are being evaluated in those in Sure PD3 ( study of urate elevation phase 3).
- another one that everyone can participate in from the comfort of their home is the Fox Insight- this is a questionnaire of virtual visits every 90 days – this is an online longitudinal observational clinical study to generate BIG data – however since findings are not objective the outcome is still uncertain – However- the tools and data within allow the participants to learn more about their illness and how to manage there care best.
- NPF Parkinson’s Central- can help provide information regarding disease and treatment and connect you to near by specialist.
- 9Zest Parkinson’s therapy app- once you input the required fields it will generate personalized exercise regimen with accompanying videos.
- Beats Medical- this app provides auditory cues to help with walking ( $300/year after 2 weeks free trial).
- Google glass– this was designed to help with gait and freezing via auditory and visual cues. however, when they put in the virtual reality mode patients did not do well getting patients CONFUSED!
- EMMA watch – help with writing via vibratory feedback
In order to be successful these devices first must be minimally intrusive in our lives. these have the potential to radically change the care of PD in the future but several hurtles still have to be over come such as standardizing these technologies, as well as assessing their true efficacy, and validity is not only imperative if they are to be of any value but also remains the biggest challenge to date; particularly as more and more devices and apps become available for patients to use.
If you are participating on any of these studies or have a device or app that you use regularly, i would love to hear from you. I am thinking of calling Dr. Jankovic about the wrist device and are already participating in Fox insight and have participated over the last couple of years in other similar endeavors of acquiring massive data longitudinally. Perhaps some true patterns can be identified which can lead to new treatment modalities to improve the life of every individual living with PD.
@August2017 All Rights reserved Maria De Leon MD
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